This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.

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Wednesday, 9 October 2013

A few days later... decision made

A few days on from my last post, the dust (in my mind) has settled and I have reached a decision.I'm changing doctors.I've taken extensive advice from various local sources and I've chosen a practice with an excellent reputation which I hope will be better than the one I'm leaving. I've filled out all my forms and I dropped them off at my new surgery today. They've said they'll take me. Actually it was easy.

it's a new dawn.....

Why did I put up with all the problems with my old doctor? Why did I spend all that time writing letters back and forth trying to sort things out? Why on earth did I not do this months ago, or even last year? Heaven knows I've thought about it enough.To be clear, my doctors's treatment of my hypothyroidism has been by the book and perfectly acceptable. I don't have any complaints regarding her level of knowledge or competency. She also promptly referred me to an endocrinologist when asked, as she ought to have done according to the treatment guidelines from the British Thyroid Association for hypothyroidism. So that's all fine.My issue with her has been that I've often found her difficult to talk to (she interrupts, pulls faces and gets agitated) and also that she bizarrely sent me for an HIV Test when I didn't need one and she didn't bother to tell me she was doing it, which upset me. The whole HIV Test thing has brought things to a head. This is what I've been holding back sharing.A June 2013 hospital blood test showed that I had become anemic (due to my heavy periods) and it also showed a low white blood cell count. Due to a mix up with communications at my GPs surgery, my GP got the impression I was very worried about this white blood cell result. In fact I wasn't at all - because no-one had indicated to me that there was any need to be worried, so why would I be? But I called the surgery several times because I was expecting some advice, or an iron prescription, regarding the anemia, our messages to each other got lost in translation as the surgery message handling system is not very robust, so she decided I was worried.
She therefore decided it was appropriate to send me for an HIV test - but she didn't tell me. I wouldn't even have known I was having the test if I hadn't asked the nurse what tests she was doing when she was about to draw my blood. When she answered my question "full blood count [fine] and HIV Combo" [whaaaat? not fine!!!], I nearly fell off my chair. I had never considered HIV infection could be a possibility it seemed that my doctor did think it could be, this was a total bombshell. Subsequent discussions revealed the test was not in any way appropriate or
needed and I declined to have it. There's nothing in my symptoms or lifestyle to indicate HIV could be an issue. When I spoke to the doctor she said that the white blood cell count will probably right itself but that if it didn't it could be worth doing an HIV test as "that is the only viral cause of an ongoing low white blood cell count" (which indicates to me there may be other non viral causes but we didn't talk about this in more detail, who knows!) Funnily enough follow up tests of the white blood cells have been fine. She was just so bloody insensitive about the whole thing. Like I wouldn't want to have something like that explained to me before just being given a test like that.
I asked the Terence Higgins Trust if they thought it was reasonable for me to be referred for an HIV Test with no prior discussion. they said it was not reasonable, in fact my doctor, in their opinion, had acted in a way which was unethical, insensitive and cavalier. I spoke to someone at NHS England for further advice, they said they agreed with THT. Both organisations commented that it sounded like a waste of NHS resources as well, to run such an uncalled for test. So I complained. About the test, the communications mix ups and about the fact that she is often very difficult to talk to, making consultations more stressful than they ought to be. I'm glad I raised the issues. However it was stressful to do and I have not got the outcome I wanted - an improved relationship with her and an apology for the HIV test referral. I have at least achieved clarity, I know now that I want another doctor. I tried everything to resolve things and it became clear that my doctor is not going to change her behaviour or her attitude and that the way she behaves and her attitude are not what I want.
I'm fairly appalled by how convoluted the NHS complaints procedure appears to be. First of all when I spoke to my doctor about my concerns she got in a total flap and insisted I put them in writing. When I did so I was promptly told the relationship had broken down (which I ddn't agree with) and told that the only way to have a discussion about it was through a formal mediation process which I reluctantly agreed to as I wanted to have the conversation. It then took ten weeks for that mediation meeting to happen and when it did happen it was just really stressful. The local complaints manager at NHS England basically told me that because my complaint had progressed to mediation with the surgery the only way to escalate it was to go all the way to the Parliamentary and Health Service Ombudsman. The mediation man told me that would likely be a tortuous experience which is unlikely to yield anything very useful and that I might want to put my own wellbeing first rather than going down that route. Indeed I do. I've been exhausted since the mediation meeting. It was stressful. Stress is not good for me. In the scheme of things this is a small matter and not something I want to waste a lot of energy pursuing. Frankly I just want my complaint noted and to move on. But there's no point it only being noted at my GPs surgery because they've made it clear they just don't agree with me. Who is my GP accountable to?Since the big restructure of the NHS earlier this year it's hard to work that out. PCTs don't exist anymore. PALs (Patient Advice and Liaison) Teams don't exist anymore. the Clinical Commissioning Groups who I thought were running the whole thing now are not involved in primary care, which instead comes under NHS England (a separate organisation). But... after many enquiries, It turns out that there is a team of people within the Medical Directorate of each region at NHS England who are responsible for GP performance management. And I have now got the details to write to them. In fact I have the name and address of the Medical Director himself. It seems that, under this convoluted new structure, this team never get to see a lot of information relating to patient complaints but I'm told they'll be interested to see this and it might get as far as being included in my GPs next performance appraisal. That's all I want. Someone who has some authority over her, telling her what I'm telling her, so that she has to take it seriously. When the NICE Guidelines say that a patient has a right to give informed consent or decline an HIV test, that means you can't just organise that test and say nothing to them about it.
I've also discovered that there is a facility on NHS Choices website where patients can post and read reviews of GP surgeries. Check it out (click the link above), if your doctor is good why not leave them a nice review, you never know when someone else might be seeking some reassurance about a surgery before registering with them. You could help. Likewise, it's worth sharing negative experiences to help people make their minds up about whether or not to give a particular surgery a go. I've just posted a review on there about the doctor I'm leaving. It's interesting to read both reviews from patients and responses from practice managers. I think if I'd seen this before I registered with that doctor I would have gone elsewhere. So hurrah for increased transparency.
I've also done a write up of the issues I've had for Patient Opinion. This website aims to share feedback with the people responsible in the relevant bits of the NHS.
I realise I'm in danger of looking a little bit obsessed and like I have too much time on my hands. Ah well. I do probably have too much time on my hands at the moment and good patient care is something I am very passionate about. Having reached what has been a massive decision to move doctors I am determined that by hook or by crook my feedback will be heard and I hope that it can do some good. Perhaps at some stage my doctor will actually reflect on her behaviour and consider how she could do things differently. At the very least perhaps someone else will avoid going through what I went through because they will read my story and avoid that surgery.. According to the GMC guidance on good medical practice doctors must be polite and considerate and treat patients with dignity, allowing them to be partners in their care, they must listen to patients and take account of their views, they must be considerate sensitive and responsive. As I don't accept that referring me for this test without so much as a by your leave - and telling me that the relationship has broken down as soon as I protest - is in line with these requirements, I'm just really cross. So that's that. The new surgery seem great. Let's see how I get on. It's so important to have a good relationship with a doctor when dealing with chronic health issues. Wish me luck.

5 comments:

Thank goodness for you being "obsessed with a little too much time on your hands" to paraphrase what you've written. Other people don't have the energy (because they're NOT well) and give up (like me on numerous occasions) because it all seems like too much stress to deal with at a difficult time. You are fab. Please continue. And so glad you've changed doctors now you can stop helping the rest of us out for a while and concentrate on getting well. Thank you Lorraine.

also - to clarify - i know that your 'obsession' comes from wanting to make a difference for ALL patients, (and why should it be obsession - it's only because the system is so difficult to navigate - so it's your tenacity that keeps you going!) and you don't really have enough time for this nonsense so again thank you.

thanks! comments have gone really quiet on this blog recently, though I can see from traffic figures that lots of people are reading the posts, it's lovely of you to take the time to give that nice feedback dear friend. xx

I echo what the previous poster has said, good for you! It sounds like your old doctor showed little empathy or desire to want to help, which is sad. I hope you have better luck with the new GP. Stay passionate about wanting to get better and find answers. As a difficult to treat thyroid patient myself, I really relate to your blog and thank you for sharing x

thank you Claire. I saw my new GP last week and he was a total breath of fresh air. I really think I should have done this ages ago. it was so simple to switch and he was just so much nicer. It's really kind of you to comment. I hope you are also having some luck finding the answers that are right for you... x